Deleted files rob family of answers

Sad and angry ... Sonja Howard joins her husband, Bill, and her daughter, Epiphony, at the grave of her son, Ezekiel. Photo: Wolter Peeters

Ezekiel was only 10 years old when his mother Sonja Howard found him dead in his bed. Since that moment in September last year, she has been consumed by grief, and fury.

All Mrs Howard wants now is an answer to how her little boy could have died only months after being given an all-clear by doctors.

But it is an answer she may never get, after Nepean Hospital accidentally deleted two months' worth of records of heart scans - including those belonging to her boy.

Nearly four months before his death Ezekiel had suffered symptoms that appeared similar to those seen in a stroke. He collapsed, and experienced weakness on one side of his body and face. Mrs Howard rushed him to hospital.

His heart and brain were given a clean bill of health, with a paediatric cardiologist declaring a special test - an echocardiogram - showed his heart was "structurally and functionally normal".

Yet after he died an autopsy found he had a thickening of his left ventricle: which at 14mm could have been a sign of potential heart problems. He also had a small hole in his heart, a common condition that is linked to heart problems but can also be asymptomatic.

Mrs Howard asked for his scans to be reviewed, only to be told the hospital had accidentally deleted the records of every patient on the machine.

"I trusted them with my son's life and he ended up dying," she said. "What would happen if the police lost criminal records?"

She is scared other people could be affected by the deleted records.

"On a moral basis I just really feel people need to know about this," she said. On Friday she and about 20 others held a protest about the deleted records, out the front of Nepean Hospital.

The Labor MP and health spokesman, Andrew McDonald, said the fact two months of data could be deleted raised questions about electronic data held state-wide.

"How can a hospital lose two months worth of data without any backup whatsoever, and how do they ensure it doesn't happen again?" he said.

Dr McDonald, who is a paediatrician but not connected to the case, said Ezekiel's death was tragic, and was probably not predictable or preventable, but now the family would never have the answers they desperately needed.

He said hospitals were increasingly digitising common records such as x-rays, which needed to be properly protected.

Kay Hyman, the chief executive of Nepean Blue Mountains Local Health District, initially refused to answer Fairfax Media's questions about the scans, but later provided a detailed statement.

She said the machine in question was used by private cardiologists, and Nepean Hospital had now upgraded the equipment to allow them to copy their scans to a portable storage device to take with them.

"In addition, at the conclusion of each private clinic, a copy of the echocardiogram hard disk will be replicated on to the computer server used to store hospital studies," she said.

She said her local health district had also warned other districts about the potential for data to be accidentally deleted. Her statement did not explain how many patients had been affected by the deletion.

The Minister for Health, Jillian Skinner, said: "The death of a child is tragic and I extend my condolences to Mrs Howard, whom I met in September at a health forum in Parramatta. At that time, I asked Chief Health Officer Kerry Chant to work with the Nepean Blue Mountains Local Health District to ensure Mrs Howard was fully informed in regard to the local health district's investigation and response and to ensure she was offered the support she requires."

A spokesman for the NSW Coroners Court said the Deputy State Coroner Hugh Dillon had recorded Ezekiel's cause of death as "unascertained natural causes (possibly sudden unexpected death in epilepsy or cardiac arrhythmia)".